PCORI has identified planning and delivery of care for patients with advanced illness and their caregivers as an important research topic. Patients, clinicians, and others want to know: How can we identify care needs and address them effectively in real-life community settings? To address this issue, PCORI launched an initiative in 2016 on Community-Based Palliative Care Delivery for Adult Patients with Advanced Illnesses and their Caregivers. The initiative funded this research project.
This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Palliative care focuses on improving the quality of life of patients with serious illness and their caregivers by preventing and treating suffering. Patients with serious illness may find it hard to travel to a clinic for palliative care. Home-based palliative care gives them an easier way to get care and may help relieve caregiver burden.
In this study, the research team is comparing two ways of providing home-based palliative care. The team is looking at how each method improves patients’ symptoms and quality of life for the patient and their caregiver.
Who can this research help?
Healthcare organizations can use results from this study when planning how to care for patients with serious illness.
What is the research team doing?
The study is taking place at 15 Kaiser Permanente locations in Southern California, Oregon, and Washington State. The research team is recruiting patients ages 18 years and older who have serious illness and who use home-based care. About 10,000 patients and 4,800 of their caregivers are in the study.
The research team is assigning about 130 palliative care nurses by chance to one of two groups. In one group, a nurse and a nurse practitioner or doctor visit the patient at home. In the second group, a nurse uses video technology to talk with a doctor while visiting the patient’s home. All patients in the study receive care to relieve pain and manage symptoms to optimize their quality of life. Patients and caregivers also receive emotional and spiritual support, help with managing medicines, and referrals to community resources. For urgent issues, patients and caregivers can call a 24/7 helpline to talk to a nurse.
At the start of the program and again one and six months later, patients and caregivers fill out surveys about physical and mental health symptoms and quality of life. The surveys also ask caregivers about how prepared they feel to care for their family member or friend. The research team is also looking at how many days patients spend at home in the last six months of their life. The team is following patients and caregivers for up to one year.
Patients, caregivers, and clinicians, such as doctors and nurses, are working with the research team to help guide the study. Health system administrators and professionals in palliative care are also helping to guide the study.